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Iris

I am holding his hand, but I can’t form words. In truth, there is nothing to say. It occurs to me it has been a full day since we have spoken to each other. It’s a blistering hot day, and I take note of the heat the same way I might notice a buzzing fly; it is around me but I cannot feel it.

My phone rings and it’s our friend who has told us to take a break and “get outside” since it would be a while, a few hours more waiting.

“The doctors are here with the results.”

I don’t say anything to my husband, just spring from the bench and sprint for the hospital door, his footsteps behind me. I am grateful for the mostly empty hallways as we run, my husband shouting the way behind me — “Right!” then “Left!”

I begin to cry as I sprint, my chest burning and arms pumping, crying because I don’t know what I am sprinting toward. The tears slide down my cheeks as I speed past blurs of people, never slowing. Whatever it is, I must get to it.

The night before, our ten year old daughter Iris had been admitted to Children’s Healthcare of Atlanta. There had been pneumonia and antibiotics and just when she appeared to be getting better, a limp had begun. I’m the idiot parent who had recently bought a backyard trampoline, so I told myself that could be it, but even as I thought it, I knew it was a lie.

“It’s bad news,” the kindly ER doctor told us hours into the night. I would be old and gray and remember It’s bad news. There are some things that instantly imprint into your being, like a raggedy edged signature carved in fresh cement.

A bone infection, they said. Bacteria from the pneumonia likely got into her bloodstream and traveled to her knee. They would start strong antibiotics right away because bone infections are stubborn things, tough to treat.

We were scared, but would experience a new level of fear the next morning when doctors swarmed our room announcing antibiotics were being stopped because they believed it to be a tumor.

Could it be cancer? It could. They didn’t know.

I had told stories of children with osteosarcoma. That, combined with some googling confirmed that tumors in little childrens’ bones are almost never good.

Off she went to the MRI tube, weeping bitter tears of fear. A childlife specialist walked her through it, and I sat next to my ailing daughter, wishing there were a momlife specialist for me.

It was after that late afternoon sprint that the doctors would tell us we were back to bone infection. Just a bone infection.

daddy

Thank God for a serious bone infection.

In the two weeks that followed, our little girl would have surgery to remove infected bone from her tibia. The drugs to fight the infection were so strong they would consistently blow out her tiny veins, necessitating daily new IV’s. The care we received was extraordinary but it was still hideous, because watching your child suffer is the definition of hell.

Big brother was worried, but pooped papa in the background makes this a favorite

Another team of doctors believe her bone infection is instead a rare inflammatory disease that affects 1 in a million, a disease that is difficult to diagnose and precisely mimics bone infections. 1 in 1 million. Overachievers-R-us. As of this writing, we still don’t know. I have made peace with the fact we won’t know for a while.

It hurts my heart that people whose children have been diagnosed with cancer will read this, how we dodged that bullet, and it pains me that they may feel resentful or angry that their dread and fear was not alleviated, but was instead confirmed. I’ve told too many of their stories. I love many of them, and I know how it happens, that in a horrifying instant the bottom falls out of your life. We see and read the stories every day, secretly feeling guilty yet grateful those people are not us.

I will never forget the hours we lived in the in-between. I researched and had conversations and made decisions, while out of my body. I was breathing but I couldn’t get air. I was walking yet my legs were a thousand pounds of solid lead. I heard myself delivering opinions and participating in discussions, yet I couldn’t think. The non stop soundtrack that lives in my wacky head came to a halt that day. The chatter of my constantly unspooling inner-narrative vanished. The silence was terrifying. Even prayer fled me. At the moment I needed it most in my life, I could not pray. Prayers were replaced by grunts of ‘please’ and ‘help.’

The sight of my daughter was exquisitely unbearable. The sprinkle of freckles across the bridge of her little nose. Her wide hazel eyes looking to me for reassurance. Her weak hand with its brightly painted fingernails intertwined in mine. The sight of the dozen stuffed doggies and kitties that shared her hospital bed.

The utter innocence of her sweet little soul that had done exactly nothing to deserve this.

Almost a month after surgery, Iris is running and playing and slowly regaining weight.

Friends remarked that I must have cried a lot. I don’t think I shed a single tear (aside from the sprint) in the hospital. I was in med school, trying to fill my head with information so I could advocate for my child.

All those pent up tears came out a week after she got out of the hospital, when my husband and I headed to Washington D.C. for 16 hours to see U2 (tickets my husband had bought half a year ago), my favorite band of more than 30 years.

I stood at a concert I had first attended 30 years earlier, a lifetime removed from the 17 year old me who had no idea what the future would deliver her, who had no idea that grown-uphood would be unbearably beautiful and awful, often at the same time.

youthful oblivion 30 years ago with my U2 BFF

Young me wasn’t so sure she could do that ‘family’ thing and would much later realize that the sound of your husband and children laughing in the next room is the holiest sound on the planet.

Seventeen year old me would one day understand that “I love you, Mommy” is the single most powerful sentence anyone would ever say to me.

My younger self had yet to learn that she would gladly offer up her life so that her child might be okay.

I wish it weren’t the case, but sometimes it takes awful, scary shit to force you to step back from your life and see it for what it really is, an unlikely miracle held together by duct tape, tears, laughter, hard work and dumb luck. I sobbed so fitfully at that concert, I’m fairly certain the poor woman next to me thought I was not of sound mind.

How could I explain to a stranger that I was having an epiphany? That sandwiched between the jobs and the bills and the lack of sleep and the kids and the worry is this luminous thing for which we all yearn — life.

It is rich and unpredictable and unbearable. It is elevating and utterly crushing, and I would choose it again and again and again.

My heart hurts for you experiencing this, but so glad for a positive outcome. I have experienced, as a grandma, the not so positive test results. The feeling of helplessness I felt as the grandma who not only couldn’t ‘fix it’ for her own child, let alone his child was brutal. Thankfully we have a positive outcome 7 and a half years later. The recent what if turned out to be good old boring appendicitis. Sending you a huge hug for sharing.

Oh my, I was with a You every inch of the way with the fear, the confusion and vulnarability of that experience. You, who has been so in tune with children’s health!!
We have had a few scares through the years with our own “children”, but were Blessed and spared of any major outcomes, Thank God.
I pray every day for my grandchildren and every child, everywhere, to be safe and healthy.
So so glad all worked out for You ALL! Hugs

I am so thankful to God Jaye that your story with Iris has a happy ending. I know as a Mom, this chapter in your life will be forever BURNED into your brain.,.It’s hard sometimes emotionally being a Mom because we love your kids so much and want all the best for them. Again, just so thankful your story has a happy ending…RUN IRIS RUN 😉

I still remember the first time you all came to see me. I looked at this beautiful little girl of yours and thought she is someone special. Both of your children were so amazingly polite This was incredibly rare and refreshing to me. I thought to my self there is hope in the world still. SW

No words, my friend.. I went through something similar when my Tommy was 4. He will be 25 next week and is married and has a beautiful 3 month old daughter and is well. God sent Iris and Jude to the perfect parents.

BTW, I knew you truly understood how many of “us” feel when you described the situation as “scary shit”. Our child’s health and well being is one of the few things in life that can bring out the best and worst within us.

Glad to hear Irish is feeling better. I pray the final results are good news, for her & you.

I remember when Rachel had her first epileptic seizure at Rain Restaurant on Cheshire Bridge. She’s on the pavement, her head supported by my hand as we wait for the ambulance. I was already bargaining. “Take me, not her.” Our love for our children is immeasurable. Thank you for sharing your cathartic crisis. Praying for Iris’ recovery. (Rachel outgrew the seizures.)

BTW, I knew you truly understood how many of “us” feel when you described the situation as “scary shit”. Our child’s health and well being is one of the few things in life that can bring out the best and worst within us.

Glad to hear Iris is feeling better. I pray the final results are good news, for her & you.

Rarely can one say they “understand” what you are going through but you describe how I felt 20 years ago when my 7 day old daughter had an infection that took several days to diagnose. She required intravenous antibiotics and her little head and feet were pricked SO many times in ultimately an unsuccessful attempt to find a vein that would stay open long enough to get her the medication she required. I know you must of felt like I did when I watched my precious 10 day old baby be taken off to surgery to put a permanent line in. A simple trip for her first check-up turned into a 2 month hospital stay, with me there as well as her source of milk. So, I really do understand and wish you, Iris and your family all the blessings this life will continue to give you!

Oh my Susan, what a harrowing ordeal for you and your little girl. You do know the agony. If only I can remember the lessons in all of this, besides the most obvious — don’t sweat small things! Your baby is all grown up now, isn’t she? Thank you for reading and writing to me.

Jaye, what a beautiful frightening story. I understand your odd feeling of relief/joy, knowing Iris’ avoided a result others don’t. A couple of years ago, a close friend asked me how I was. I said, “everything is wonderful and awful at the same time.” I wish I could take those words back. That friend would pass away within a month of that conversation – and I realized – I had no right to make that statement. Everything is indeed – wonderful. Thank God.

Dale, thank you for writing. About your story, I think you saying evverything was ‘wonderful and awful at the same time’ is perfectly fine. I think that is just the truth about life. It delights us, and then knocks us to our knees. I believe in my heart your friend who passed away knew that, and probably even agreed with you.I do hope you are well and that everything is wonderful! xx

Thank you Jaye for always touching my heart with your words. I love your stories. Never miss one! You put to words what we all feel in our souls. I’m so happy that your daughter is doing better. God Bless your wonderful family.

My heart breaks again as I read your post Jennifer. Iris is our little angel, we adore her and we worried right along with you and Kenny. What a horrible feeling, being so completely helpless as your child lays sick. Praise to God for protecting our baby girl and returning her to good health. We love you, Kenny, Jude and Iris ❤️

I am so very glad that your daughter is going to be healthy and back to normal. I think feeling isolated, anxious and fearful are universal feelings when our children’s health is in question. When my daughter was 15 months old she had a blood infection that was misdiagnosed multiple times. She ended up staying at CHOA for a week and it was terrifying. They mentioned probable organ failure and death. Luckily, she survived and is healthy. You expressed everything I felt, even the guilt of my child getting better when others are facing more health battles. Thanks for sharing this story.

So you know how we felt. It’s knee buckling stuff, isn’t it. And very numbing, I might add. Almost like the world should have a white noise static buzz to it. I’m so glad your daughter recovered. Even if Iris has the disease, we’re still incredibly lucky.thank you again.

Wow – beautifully written. Your telling of this unbelievably stressful, frightening, and harrowing experience is so moving. Even though I knew the story, reading this added so many dimensions which helped me understand what you all went through on a much deeper, personal level. So glad Iris is doing so much better!

I wanted to race ahead while reading to be sure that Iris was going to beat this scare. I am so thankful that she has. Your ability to weave layers and folds of emotion into word is a talent. Your willingness to share is a gift.

Robin, thank you for reading. It’s funny, when I was reading what you wrote, I thought, ‘I wanted to race ahead, too.’ Of course I felt this way at the hospital. I just wanted to know the ending. And we still don’t. So, clearly lessons this girl (that would be me) needs to learn, I guess. Thank you again.

Beautiful story. Loved reading it and getting to know Iris and your love for her. So glad for the positive ending and the lessons in this scare. Let’s hear it for U2 also! Thanks Jay for all these words, thoughts, and feelings.

Great advice, Brad. Yes, I’ve done so many stories encouraging bone marrow donation. As a matter of fact, that was the latest story I told for my station. So yes, by all means, get swabbed to see if you’re a match! Thank you.

I’ve listened to you as a Quiet Hero through three lunches. Your empathy and understanding of our lives has been wonder fully apparent. I’m so, so sorry you had to experience some of it on a personal level. BeSt wishes for you and your family to continue healing.

I think writing our own stories are often more difficult. I believe they certainly take more courage. You’re not putting the intimate details of someone else out there – but your own. But we can’t know to pray if we don’t know the need. Thank you for sharing. As always beautifully written.

Oh, Jaye, I’m so sorry for this heart-wrenching experience that you and your family had to endure. You perfectly described in slow motion what it feels like when a person you love more-than-life is seriously ill, especially when no one can provide the answers you need to hear.

Yes, grownup-hood carries with it hardships and heartbreak unimagined when we were young and innocent. You feel that you can’t your breath, yet you must be breathing because you are still here. You feel that your heart cannot hurt more because it’s already shattered to the core, yet it still beats, and most of all, you know if something happens to take someone you love so completely away that you could never survive, but somehow, in this grownup world we must survive for others and we do.

Your recent experience will be with you the rest of your life, yet from tragedy comes an acute awareness of what is truly important in life. We become more existential in our thinking…always aware that time is so damn precious. Did we use that time wisely? Do the people we love know how much? Even though we sometimes do not pray as we were taught, do we know that God is there any ole way? And should our worst possible nightmares happen, we will get through it (but have no idea how we did), and the loss never goes away, because the more we love; the more we grieve. Your heart took a beating, Jaye, so please don’t think you’re losing it or ever be embarrassed over tears at the oddest times.

There was an eclectic album made by Marlo Thomas back in the 1970’s called “Free to Be You and Me.” It was for children, and in my opinion, it has a timeless message. One song on the album was sung by football legend, Rosy Grier. My favorite words were, “It’s okay to cry, ’cause crying takes the hurt out of you.” When I still cry over the loss of my husband one year ago, I think of those words. I, also, know that I will not ever heal completely because we were inseparable. Knowing this allows me to go forward, be the best I can and know that I will see him again one day..

Sorry this is an epistle, but how can you say these things in a pithy way? Again, I’m so happy that your precious daughter is home and that you were able to share your experience in writing. I am sure that you have touched many hearts, for you truly touched mine. Love you, Jaye!

Gail, I love your epistles! This is so beautifully put, and it breaks my heart because I read it thinking of you and Burt. I was in such agony for you. I loved your geese stories and love stories and when he fell ill, I was so so worried. I know you write this from a place of pain and first hand knowledge and I thank you for taking the time to share this with me and with others. I send you love, light and hugs. Please know I think of you often and I hope you are doing okay, and I believe with all of me you will see him again. xoxo

Thank you, Sarah. I didn’t write a word for a while, but when I don’t write about stuff, it builds up and tackles me. I forced myself to write it a few days ago and as always, it was ultimately cathartic, and helped me to understand all of it better. Thank you for your lovely words.